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tv   White House Chronicles  WHUT  April 8, 2011 6:00pm-6:30pm EDT

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>> hello, i'm llewellyn king, the host of "white house chronicle." which is coming right up. first, let me tell you about today's show. it is very special, different, and it is a very, very important. we are going to take a look, the second book we have taken, all the terrible disease chronic fatigue syndrome, which afflicts may be as many as 8 million
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people, which has all sorts of social implications and for which there is at this point in time no cure and lots of resentment among the patients about the way they are treated, the way they are isolated, and the way the disease is not taken seriously. particularly there is great unhappiness about the amount of research done in the u.s. government for this disease. of course, this is critical, because this is a time when there is less and less money in the federal budget -- maybe none at all -- for diseases like chronic fatigue syndrome. i assembled an extraordinary panel of interesting, provocative people who will keep you riveted, i assure you. we will be right back. >> "white house chronicle" is produced in collaboration with whut, howard university television. now, your program host, nationally syndicated columnist llewellyn king, and co-host linda gasparello. captioned by the national captioning institute
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>> this program is sponsored by -- public service, a leader in renewable energy, hoping to make arizona the solar capital of the world. i promised you a special panel, and here is the special panel. on my left, the enormously talented amy marcus of "the wall street journal" who has been writing about this disease for quite some time and regarded as a very important chronicler of the development of the disease. on my left, leonard jason of depaul university in chicago, a clinical psychologist but a clinical -- critical player in this field. one, because he suffered from the disease at one time, one of the few people who recovered, and also, i understand, you have been instrumental in laying out
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the parameters of the patients matrix -- how many people actually have it. which the government had difficult accounting. old friend and talented colleagues, deborah waroff, an author in new york who has been afflicted for 22 years but who gallantly fight on and comes down and helps us try to understand this disease on this program. and a new but most welcome guest at the table, frances sellers of "the washington post" where she is the editor of the health and science section of that great newspaper. welcome. let's begin with you, leonard. tell us succinctly what is chronic fatigue syndrome. >> this is an illness that basically affects about 1 million people in the united states, as you mentioned. and this is a very debilitating illness. when we look at other types of chronic illnesses, the functional and capacity of
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individuals is at least as great -- just about the worst ... you could have. basically it is an illness that affects many people. it is very functionally debilitating and also an illness that people had that basically don't have good access to health care system. because when people talk about having an illness with a trivial names like this, and they go to the healthcare system, they are also basically punted into more psychiatric care as opposed to the type of primary care they need. >> debra, would you like to tell us what happens when you get this disease? a horrible thing -- once you said, and i quoted in an article and had almost 100 e-mails overnight -- how you lost much of your adult life to this affliction, if you will. tell me what it is like. what happens? >> well, i think in terms of your functionality, the most important thing is you find you absolutely can't move. i often compare it to being a
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car without any gas in it. you look perfectly all right when you see your friends -- they say nothing wrong with you, you look great today. but it is not true. what you also are is, you might start a little at a -- -- like a car given a pint or so of gasoline and new putter a bit and then you do a bit too much and there you are again. the cars stranded on the street. but there are a key sentence also, the most prominent of which, i think, is the excess collapse after activity or exertion. and that really is the ultimate marker. sorting out this disease from things -- >> when you say collapse. let's be more graphic. you cannot move, it can i get up and eat and is that -- that kind of thing, prepare a salad? >> right. actually, salad is how a judge
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might on this. i remember back, that period of time i was able to make salads. i had enough energy to stand up, to make up the sauce and cut up a few veggies, and then when i am bad, i can't make a salad. it is just unbearable. as though you were doing the last 20 yards of mount everest. but you have not done anything. >> this is a disease that i happen to know from my own experience of writing about it. it has a very active patient population. they are confined at home and those lucky enough to have the internet to not hesitate to use it. i have found that in writing about it, a column for the first segment -- it syndic it -- i wrote one this week and already i had more e-mails than the previous month. have you had that same experience? >> definitely.
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patients want to engage. they have ideas and suggestions. they don't like something you wrote with the -- or they do like something the road and they are not shy. i like that. >> they have an attitude. they collectively believe there has not been sufficient research and society tends to ignore them. that comes through in all the letters i get. >> i write frequently about patients who have rare disorders and often feel marginalized. the difference i find is that with patience that have a rare disorder, there is anger there is not sufficient money being spent on research, but they don't feel that they have been judged harshly or disbelieved. that is where the difference comes in with the patients that have chronic fatigue syndrome. there is an anchor always having to prove some of a truly are ill. >> they put some of the downs of
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the name -- chronic fatigue syndrome. >> a very challenging name. it does not explain very much. >> it sounds like do >> it is very interesting, the symbolic power of the name. there are other illnesses where people do not want to be defined by the disease but they say they suffer from a disease, and that is something they are careful with. not as someone is diabetic but they suffer from diabetes. described by a symptom, chronic fatigue, takes away the idea that it is coming from the outside. >> frances sellers, as an editor of a whole section that deals with health, how do you deal with pressure from patient groups and lobbyists, etc. -- my disease, my disease? >> there are many diseases, many were the causes. -- worthy causes. we report news -- the primary objective, so we report trials and a lot of feedback. particularly in these days of the internet where comments that
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follow articles. i think this has been a huge change in the way patients of all sorts have been empowered and they can respond directly and i am sure amy speech in this. two articles -- comments that, afterwards, patients can talk to each other and a follow up on the internet. the notion that in some way the media controls the message about any of these diseases has changed dramatically. >> this sounds a bit melodramatic, but in more than 50 years in writing in newspapers, i have had more reader response to cfs than anything else. a big political stories, stories, funny stories. this is the one that has really driven -- of course, the internet is more -- than it was 10 years ago -- and in my day there was no internet -- but i have not seen anything like this. these people are held together and there is a common theme. there is no cure, is there?
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>> there is no cure. and the patients we are talking about are so angry because, of course, there is not a cure but also not treatment available. when a patient gets referred to primary-care, often what happens is they get thrown to the psychiatrist to put them possibly on antidepressants. what they basically say is we don't want that type of treatment. we want to have our medical condition treated. the word fatigue, which is a label, which -- is something that may not be the main symptom for some -- many of the patients. think of the worst case of the flu that you ever had and not recovering from the worst case of buffalo, and then you have a sense of what you are experiencing. it is not just fatigue, but it is filling -- feeling sick, like you have a poison going through your body. >> as a psychologist, suggesting people are being shunted are thrown into -- [laughter] here is is extremely important organ and the body, and can and
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not being part of playing some role in this? >> think of it this way -- any chronic condition is basically probably going to push you toward having more stress and more difficulties dealing with work, family, and other associates. so, yes, mental health is and ports and for people who need that. think about it. cancer -- and you cancerhiv or aids and you go to your primary care doctor and they say go to your psychiatrist and anti- depressant, and that is how they treated you, that would basically get you a feeling rage fall. i have spoken to many patients who have been out of the health- care system -- once they tell people they have this trip will sounding name, chronic fatigue syndrome to get used to be called -- and they changed it. >> who changed it? >> this was changed in 1988 by the centers for disease control.
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if you basically say you have a chronic cough disease, you will probably say, who cares, everybody cox. but if you say you had emphysema and bronchitis, it may be something serious. what i am saying it is not that mental health is not important, but i talked to people in great britain -- and i think you have some connection and that country -- when they talk to me they say when they go to primary care, they basically are not treated for all the other health issues they have because they are thought to be psychiatric, psychogenic. that is the reason they are ragefull because they feel -- they want the best of medicine. of all the different aspects, multidisciplinary team, and they are not getting that. what they are getting is seven or eight minutes for somebody -- but someone who basically does not get to know them and often prescribes inappropriate treatment. >> britain has been an interesting case, probably the most unfortunate patients in the entire world because of a series
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of events -- who knows who and who controls what -- it has been labeled a side track -- psychiatric disease in britain and it is only allowed, according to the rules they get out to primary care physicians, you are only allowed to treated as a psychiatric disease and refer, no matter how much nausea or headaches, or no matter what weakness, the matter how sick they feel, you are only allowed to refer it to cognitive behavioral therapy are graduated exercise therapy. this involves a long story about the last 15 years of british medical politics and i will not get into it. >> but i am curious about cft and exercise therapy -- is that something you did not agree with? >> there has been a huge 5 million pound sterling came out -- study that came out. the press release had a -- study
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that it definitely helps you and a lot of journals on the united states picked up just on the press release, and they say cognitive behavioral therapy is good for you, but if you read all several hundred pages of this betty, you find out that in fact, none of the patients who were very sick were treated. anyone with any sign of a disease was excluded from the test because obviously they could not get in for the cognitive therapy. number two, you find out that the only objective tests -- >> usa it does not work. >> -- you are saying it does not work. >> it shows it made no significant difference. it mostly does not work on most people. >> i like to pause for a moment for station identification, in particular for our listeners on sirius xm satellite radio, you are listening to "white house chronicle" from washington,
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d.c., with no well in king and today with amy marcus of "the wall street journal." amy marcus -- leonard jason, of depaul university, and frances sellers from "the washington post." it can also be seen on the english-language service of the voice of america. is this analogous to the early days of age where people cannot believe them, when they were ashamed -- and big celebrities, most notably, elizabeth taylor got involved and dealt with this same issue and some progress was made. compare them i did not cover that, so i cannot make a direct parallels. but i do see this as being in their early days when a patient community is starting to get activated on its own behalf. i think that although it can be unfair, patients do often have to drive research and funding in
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there on disease. and when they start to come together as advocates and to set an agenda as advocates, i think there are a lot of examples -- breast cancer, another one that is similar -- where you can create the public agenda on behalf of your condition. i think that is what we are seeing here. >> you think of the susan g. komen, a the movement was this -- from her sister. ucla raising of awareness. in terms of a cure for cancer, i do not think it will come out of the susan g. komen movement. i doubt very much. it will more likely come from a hard-working scientists -- >> it drives money. >> whether it drives money away from other cancers is another issue. it is a huge concern and very controversial. >> if you look at a different
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bill as groups and the prestige of the different illness groups -- on both prestige and funding, chronic fatigue syndrome is at the end of the list. in terms of prevalence, funding, the disparity is just incredible. i am suggesting is that, if you look at how many people -- again, hiv is very important, but less than a million people with hiv and hundreds of millions of dollars being spent. chronic fatigue syndrome, nih maybe $4 million to $5 million a year. >> how as a journalist you keep yourself involved in this and caring about it and not being taken over by it and losing your object city? all three of this -- all three of us -- beverage -- if you write favorably about someone it is like you joined the team and if you write something differently they think you are a traitor and you let the team down. i have been on that in many
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subjects, from civil rights to nuclear power. it is lightly fried in what people say you are doing a great job for us, because you know minute step is you are a traitor, a terrible person, you are worse than we could have ever imagined, having raised our hopes and now you go and say, calm down, or you just a report somebody saying something in a contrary point of view. how do you deal with that? >> i don't know. i feel that i report every story the same way, which is, i ask both sides for comment, i read every paper myself. i never work off of a press release. i will only read the paper myself and will not write about something unless i have read it. i tried to contract -- contact the researcher. i don't feel i am favorable or not favorable on any story that i do. i think i am fair and accurate. those are my two goals. >> another subject --
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interesting story. we ran a piece a few years ago about what somebody -- some people believe as chronic lyme disease, as some people feel there is overlap. there was a piece reporting the state of the science and some people about the science has not moved quickly enough -- reported both of the issues. afterwards, i went into work and my e-mail was overloaded and the ombudsman got calls from patient advocates. i began telephoning, telephoning patient advocates -- and to one particular person, a leader of the group, did you think this piece was not fair minded? she said to me, actually, yes, i did think it was fair minded. and i said, can you tell me why i am getting letters, including ones that were quite hostile and threatening to hurt me? she said? oh, have they, too hard -- i will hold them off. at the next day, the e-mail --
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>> this is something we face a journalist. i remember one night when i worked at "the washington post" won senator henry jackson was running for president and as the night went on in the composing room we got more and more copy and we were cutting down the size of the pages. we call it wacking the cuts. they put it in a big guillotine big when it'sbang. the audience was giving a speech -- he thought this was a deliberate attempt to show he could not draw an audience. i thought, my god, at 1:30 a.m. in the morning, we do not care -- not on your side or against you. that is part of journalism. there may be more in this case because people are suffering and have the sense of no hope. tell me about how the numbers are counted and how it works and then we should talk about there is a believe it is a virus
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responsible. >> again, to comments quickly -- one of the reasons patients are so upset with the media is there are so many media stories that basically put patients down and basically suggest to them that they are just malingering, a bunch of bored housewives, and they are depressed and should get on with their lives. that is the media bias that -- >> i would never mistake you for a housewife. >> so, i am suggesting when people who have had very high functioning, and have been very involved in their lives, when they have a sudden decrease in their performance that they can no longer go to work, they are trying to figure out what happened and they do not want to be patronized or put down by the media or the work associates or family friends who take those reports and then victimize them again. these are patients victimized by the elements and the media further victimize them and also the medical community. >> i am thinking of pieces of like leonard jason --
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hillenbrand's piece in the new yorker. the ec terms like malingering? >> it was called the yuppie flu in the late-1980s -- >> that was 30 years ago. recently you feel the same way? >> i would say the last year there has probably been better press but i am talking a 35-year period. let us go to the yuppie flu, something people still associate -- >> i have found the sort of mononucleosis on steroids, the kissing disease, something college kids get. >> when you look at the demographics of this illness -- we did a community-based study in chicago and in a bid thousands and brought them in for medical illnesses and we found that basically most people who had this illness tended to be not yuppied but in poverty,
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more minority communities. >but i am just saying there was a period of at least 10 years in the 1990's when there was a myth that was out there that was an incorrect. fortunately that myth has been changed. but there are still many people who are continuing to be, i think, victimized. >> that have a subject we have to touch on before we wrap this up, one of which is the widespread belief there is a virus responsible, retrovirus called zmrv, which the patients want to believe and there is evidence it may be that and there is dispute about it. what do you think? >> i certainly don't think it is a false belief. the scorecard in terms of testing done is roughly neck and neck between test of that have found that in chronic fatigue populations and tests that have not. that includes a lot of tests
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that did not have chronic fatigue syndrome patients in of the population. a lot of people did the studies on other people, like people with depression, mistaken for it. so, it looks like there is certainly an xmrv sitting around there. whether it is because, people did not know. whether it is the only virus involved, people don't know i think what it is doing is it is demanding to be steady more and it is demanding that the other viruses and bald, which include some of the herpes family, also demand to be studied more. >> amy, there is a private clinic, restitution out in reno, nevada, where there was a big outbreak that in 1985 of this disease and where a local developer and his wife annette to contributed money to the establishment of a dedicated laboratory in conjunction with the university to study this,
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and the titular to study it. how is this going? >> i just know from what i have done in previous stories, so i did not know what is going on exactly at this moment, but they led the team of researchers that published in 2009 a paper in " science" that found xmrv in higher numbers of chronic fatigue patients than the controls used. now you have a number of groups disputing the finding. there are still some major studies that have not weighed in and i think everybody is waiting to see -- for instance, there is and ni-h sponsored study led by a columbia university professor. that one is still there. they have yet to enroll patients yet so that would take time to get results. there is the blood working group, a federally-driven growth of people, including the bay
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peterson institute -- >> i think we should say about s daughter, she was very affected, and got married and could not stand up at her wedding. i am told her husband have contracted it. it brings me to the question of how contagious is this disease. there are families that have it. a lot of e-mails of spouses or children who have gotten it. very frightening to families because if you lose both breadwinner's you are in terrible shape. how contagious is it, leonard jason? >> certainly there have been outbreaks in different areas. >> upstate new york. >> ""the wall street journal" had a nice piece on it a few weeks ago. what does the media say about some of these issues -- if retroviruses come out as a
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possibility and certainly there is a tremendous amount of excitement and the patient community on this. what i see from the newspapers -- not your particular report -- is it is all contamination. so, when i talk to people, they say to me i hear it is does contamination. rather than waiting to find out these and poor is that is are done, the media jumps and and make judgment. >> the media covers the studies as they are published. you cannot have the media ignore a published study. i do not -- no -- >> we are running out of time here. >> i have to say that the people that are saying it is contamination of the british people who are absolutely brilliant at publicity. they stage a things absolutely beautifully. if the media has been captured by them, no fault of the media. >> the last word, deborah. this has been made possible by arizona public service, a leader
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in renewable energy. working to make arizona of the solar capital of the world. thanks for watching. we will see you next week. cheers. en, she >> "white house chronicle" is produced in collaboration with whut, howard university television. from washington, d.c., this has been "white house chronicle," a weekly analysis of the news with insignt and a sense of humor featuring llewellyn king, linda gasparello, and guests. this program can be seen on pbs
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